Monday, September 12, 2005

Not without risk

Today was a good day.  John got up early.  Early as in 11:30 AM.  He has been feeling a little bit better lately and hasn't caught anything in a few days.  So he was able to get up this morning and make a doctor's appointment.  And get some bloodwork done.  And he even came home and helped with some housework.

I made a chicken dinner with the trimmings.  It was real nice to eat together and have some quality time. 

I also received two books in the mail that I had ordered.  One is called Bone Marrow and Blood Stem Cell Transplants from bmtinfonet.  The other is called Across The Chasm, A Caregiver's Story by Naomi Zikmund-Fisher.  I feel so good to be armed with information.  It is empowering.

Well, I thought it felt good anyway.  Until I started reading the caregiver book.  The caregiver book is written by a woman named Naomi whose husband had MDS and was waiting to have a bone marrow transplant.  (He eventually does have a successful one.)  Each page is written in entry form just like this journal.  She wrote it to keep others informed as to her husband's progress.  Well, I was thoroughly into the book, and it was helping me, until I got to this one entry.

Actually, this particular entry was written by her husband, Brian Zikmund-Fisher.  He explains that he was only given about 25% chance of making it through the first year of the transplant.  He explained why.  Now if you are squeamish, I suggest you stop reading now!  Seriously. 

A bone marrow transplant patient is given extensive chemotherapy and/or radiation before he starts his transplant.  During this time, the chemo destroys his bone marrow and his immune system.  The purpose of this is two fold.  The first reason to destroy the bone marrow is to get rid of every cancer cell that is residing in the body.  The second reason to destroy the bone marrow is so that the new donor's bone marrow can be added.

Herein lies the big risk.  Without an immune system, the transplant patient is vulnerable to any infection that comes along.  As Brian explains it in the book, "even a minor cold can kill you, and unfortunately, sometimes it does."

So that is what I read about today.  Not too much fun stuff.  Pretty scary.  I have also read about other complications to a bone marrow transplant.  One is GVHD, which happens when your body is trying to reject the new donor's bone marrow.  And then there is the total failure to engraft.  This right out kills the patient.  Total engraftment is very rare these days I have read, but nonetheless, a possibility.

OK, so if you have read to here, you probably have guessed how nervous I am.  But still hopeful.

Oh, and modern medicine is ALWAYS improving.  From glancing at the book, Brian had his bone marrow transplant in 1998 or 1999.  Modern medicine has come a long way.  These transplants are improving. 

John and I have hope.  Lots of hope.  


  1. Krissy, read everything you can on transplants and people's experiences, but John and your experience with this will be unique, your own. Keep this information to educate yourself, but don't dwell on it exclusively because even though he's going to have that chemotherapy and its going to wreck havoc on his body, his experience could be totally different and better than anyone else's. I bet there has been an extensive amount of improvement in things since that family's journey. Continue to hope and continue to pray.

    hang in there, hugs to you,


  2. It is great to be informed.... and you should be, but remember to also keep hope. For every bad thing that CAN happen there is something good that can happen also! So, be aware of the bad things, but concentrate on the good.

  3. Always hope and love - but remember, whatever God's will, love is stronger than all other things! It will get you through the good and the bad.

  4. Thank you for adding me to your private journal. I hope this book gives you hope and some understanding, though it does sound scary. Brandie

  5. Medicine has advanced a long way in that time.  Continue to hope Krissy always. xxRache

  6. Glad you both had a good day:)


  7. really glad you and John had a good day to-gether, I read with interest all of your entry - every word - but I know you and John will never give up hope - As you probably know I had Radiotherapy over twenty years ago to treat cancer and Im still here....John has that same fighting spirit and you do too....My Hopes and Thoughts are with you both...Ally

  8. glad you both had a good day. I know it is hard not to worry but modern medicine is remarkable nowadays. Prayers and thought still being sent to you both.........Jules xx

  9. I know it's not the same thing at all, but when my J was diagnosed with autism I read up on it, just as you are doing now with John's MDS.  I read so much that I scared myself!  Alot of what I read wasn't true for my J though, every case is individual, and while it's imortant and useful to know all the facts, it's also important to keep that in mind.  I don't know much about MDS, other than what you have told us, but John is an individual and his journey will differ from anyone else's too.  I'm glad that you and John have lots of hope :o)
    Sara   x

  10. Yes, keep hope, cling to it, your faith, and each other.  And be comforted knowing prayers are sent heavenward.  My father had a bone marrow transplant.  The book you read from corresponds to what doctors told us.  NOTE: When reading about medical information, keep in mind that advances are always being made.
    Best to you and John,

  11. Krissy,
    I see how hard this is.  But you always need to remember that Our Lord is the Great Physician.  With Him EVERYTHING IS POSSIBLE.  Prayers continue for John and you too Sweetie.  Loving you, LuAnne

  12. Krissy, I am SO GLAD you are reading these books!!!  They really will help you.  I am sure they are already!  Can I borrow the books when you are done?  Hang in there, honey.  Hugs and prayers to you and John...xox

  13. Krissy,
    Good to hear John has some energy.  I hope it continues for him.   As for the caregiver book, don't let it discourage you.  You can keep John away from colds, flu, etc.  Buy lots of mask.


  14. I think you are right.  I would need all the information I could get my hands on.  I`m am so glad that you have so much hope as it can only help you both. Thank you for inviting me to read this journal Krissy. :-)

    Sandra xxxx

  15. Scarey to read..but better to be informed..even it isnt what we always want to hear,,glad John had enough energy so yyou could have  nice meal together,,,Kasey

  16. Your doing a great job on all your is going to be such a huge help knowing all you can.  very happy it was a good day,

  17. 1998 or 1999 is a lifetime ago in the field of medical cancer treatments...please, understand that is true.  I am praying and feel actively hopeful that you will have a donor and good results.  Hang in there...arming yourself with info is good, but too much can be scary.

    Be well,

  18. You and John are an inspiration to me.  God has permitted such a trial, and you are witnessing to Him in such a beautiful way.  Keep the faith, keep praying, and know that Jesus loves you with his whole heart.  He's got you completely.  -Kellen

  19. These books are probably scarey because it's a scarey thing you are going through, never sure of the outcome. John is lucky to have you there to look after him, I'm sure you are a great help and source of inspiration to him as he is to you. I pray that he will get a donor one day soon. I think you are a very brave couple. With love to you both, Jeannette.

  20. I have hope too!!!
    Linda :)